{"id":3309,"date":"2025-07-09T08:00:07","date_gmt":"2025-07-09T06:00:07","guid":{"rendered":"https:\/\/www.centrodinoferrari.com\/senza-categoria\/la-storia-di-gianpaolo-e-la-sua-lotta-contro-la-charcot-marie-tooth-2a\/"},"modified":"2026-03-20T17:05:20","modified_gmt":"2026-03-20T16:05:20","slug":"la-storia-di-gianpaolo-e-la-sua-lotta-contro-la-charcot-marie-tooth-2a","status":"publish","type":"post","link":"https:\/\/www.centrodinoferrari.com\/en\/dallassociazione\/la-storia-di-gianpaolo-e-la-sua-lotta-contro-la-charcot-marie-tooth-2a\/","title":{"rendered":"Gianpaolo\u2019s Story and His Fight Against CMT2A"},"content":{"rendered":"\n<h3 class=\"wp-block-heading has-text-align-center\"><strong>A diagnosis doesn\u2019t change who you are, <\/strong><br><strong>but it can change what you choose to do<\/strong><\/h3>\n\n\n\n<p>&nbsp;<\/p>\n\n\n\n<p><i><span style=\"font-weight: 400;\">&#8220;I don\u2019t just want to tell my story. I want to turn it into something that can help others&#8221;.<\/span><\/i><\/p>\n\n\n\n<p>This is how our conversation with <strong>Gianpaolo Vinciguerra<\/strong> began. No preamble, no beating around the bush. From the very first minutes, it was clear that we were speaking with a determined, practical person\u2014someone who gives words their proper weight and uses them to build, even when they speak of pain.<\/p>\n\n\n\n<p>Gianpaolo is 44 years old, lives in <strong>Olbia<\/strong>, has a family, and a long personal history shaped by research, obstacles, and transformation. His life is one in which the disease didn\u2019t arrive suddenly\u2014it was there in the background, long before it even had a name. He grew up with early signs\u2014most notably, severe difficulty walking\u2014that at the time were not linked to any specific condition. His mother had experienced the same problems.<\/p>\n\n\n\n<p>\u201cShe had surgery for high-arched feet,\u201d he explains, \u201cbut no one ever suspected it could be a genetic disorder. No doctor had ever told us.\u201d When his older brother began walking with difficulty, it was assumed he was simply \u201cimitating\u201d their mother. Only years later did the truth emerge: their mother was a carrier of a hereditary neuropathy, and her children had inherited the same mutation.<\/p>\n\n\n\n<p>But it took years to reach a diagnosis. Many visits, multiple institutions, long waits, and false assumptions. The correct diagnosis came when Gianpaolo was 28 years old. Only then could everything be named: <strong>Charcot-Marie-Tooth disease type 2A (CMT2A)<\/strong>, a genetic neuropathy caused by a defect in <strong>Mitofusin 2<\/strong>, a protein essential for the proper functioning of nerve cells. Although classified as a rare disease, CMT2A is more common than generally believed, as many cases remain undiagnosed due to lack of information or are confused with other conditions.<\/p>\n\n\n\n<p>\u201cKnowing what I had didn\u2019t solve everything, but it changed everything,\u201d Gianpaolo says. Having a diagnosis means knowing how to orient yourself, understanding what can be done, who to turn to, and how to protect your future. The anger that had accompanied him for years began to transform\u2014not disappear, but take a new shape. \u201cAnger can be a good motivator, but a terrible advisor,\u201d he explains. Step by step, Gianpaolo decided to change the trajectory of his life. To stop being passive and start transforming. He chose to fight\u2014for himself and for others\u2014against prejudice, bureaucratic obstacles, and architectural barriers: daily battles for the rights of those living with visible or invisible disabilities.<\/p>\n\n\n\n<p>During those years, he moved to Olbia for work, initially in the <strong>aeronautics sector<\/strong>, handling passenger support and back-office activities, and later working in pricing and commercial strategies. A new phase began: building a family with his wife <strong>Simona<\/strong>, while also pursuing personal and professional growth in <strong>communication, neurolinguistic programming, and coaching<\/strong>. Today, he is a professional <strong>mental coach<\/strong>, guiding people toward their goals just as he did with himself. He chose to understand his disease up close, to confront it, but above all, to not let it define him\u2014and to help others do the same.<\/p>\n\n\n\n<p>\u201cAt some point, I realized that the world responds to what you ask of it. And if you really want to change something, you must be willing to challenge yourself as well.\u201d<\/p>\n\n\n\n<p>From this awareness was born his greatest desire: to give back. To thank those who, through research and science, allowed him to <strong>name his disease, understand it, and protect his future<\/strong>.<\/p>\n\n\n\n<p>For this reason, Gianpaolo decided to take action and organize an <strong>event open to everyone<\/strong>, taking place on <strong>October 17 at 5:00 PM<\/strong> in the hall of <strong>Olbia Airport<\/strong>. The event has a dual purpose: to shine a spotlight on a still little-known disease\u2014<strong>CMT2A<\/strong>\u2014and to <strong>raise funds to support scientific research<\/strong>.<\/p>\n\n\n\n<p>The initiative was made possible thanks to the support and collaboration of the <strong><a href=\"https:\/\/www.progettomitofusina2.com\/\">Associazione Progetto Mitofusina<\/a><\/strong> and numerous local partners, particularly <strong>Geasar<\/strong>, which provided the venue and strongly supported the event\u2019s realization.<\/p>\n\n\n\n<p>During the event, Gianpaolo will personally share his journey: a childhood marked by an undiagnosed disease, anger transformed into motivation, the choice to train and help others, and building a life despite\u2014and thanks to\u2014the disease. Alongside him will be two special guests: <strong>Prof. Stefania Corti<\/strong>, head of the neural stem cell laboratory at our <strong>Centro Dino Ferrari<\/strong>, University of Milan \u2013 Policlinico Hospital, and <strong>Dr. Federica Rizzo<\/strong>, researcher. Two key figures in CMT2A research in Italy, who will provide an overview of the latest scientific progress in the treatment of CMT2A and related disorders.<\/p>\n\n\n\n<p>\u201cWe cannot continue to think that rare diseases only affect a few. They are on the rise, but often go unrecognized, and many diagnoses still arrive too late. We need information, research, and support.\u201d<\/p>\n\n\n\n<p>And today, this is his battle\u2014not against something, but <strong>for something<\/strong>. For a future with more answers, awareness, and opportunities. Because change begins here.<\/p>\n\n\n\n<p>The event requires a <strong>20-euro contribution<\/strong>, which will be entirely donated to our <strong>Centro Dino Ferrari<\/strong> in support of the <strong>Mitofusin 2 research project<\/strong>.<\/p>\n\n\n\n<p>To register and donate: <strong><a href=\"https:\/\/www.centrodinoferrari.com\/en\/come-sostenerci\/\">CLICK HERE<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>A diagnosis doesn\u2019t change who you are, but it can change what you choose to do &nbsp; &#8220;I don\u2019t just want to tell my story. I want to turn it into something that can help others&#8221;. This is how our conversation with Gianpaolo Vinciguerra began. No preamble, no beating around the bush. From the very [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1757,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"give_campaign_id":0,"footnotes":""},"categories":[254],"tags":[255,256,257,258],"class_list":["post-3309","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-dallassociazione","tag-charcot-marie-tooth","tag-cura-charcot-marie-tooth","tag-malattia-di-charcot-marie-tooth-di-tipo-2a","tag-ricerca-charcot-marie-tooth"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Gianpaolo\u2019s Story and His Fight Against CMT2A - Centro Dino Ferrari<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.centrodinoferrari.com\/en\/dallassociazione\/la-storia-di-gianpaolo-e-la-sua-lotta-contro-la-charcot-marie-tooth-2a\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Gianpaolo\u2019s Story and His Fight Against CMT2A - Centro Dino Ferrari\" \/>\n<meta property=\"og:description\" content=\"A diagnosis doesn\u2019t change who you are, but it can change what you choose to do &nbsp; &#8220;I don\u2019t just want to tell my story. 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